Top Tweets for #MECFS24
This 3 part research roundtable series was born from Ron Davis's #MECFS24 meeting. Some people on our team brought up mechanical #MEspine issues & questioned how they might relate to the myriad molecular results being presented at the meeting.
#MECFS #LongCovid #MEspine2024
Next Friday: research roundtable with Robert Naviaux!
Dr. Naviaux is a Professor of Genetics, in the Departments of Medicine, Pediatrics, & Pathology & is an internationally known expert in human genetics, inborn errors of metabolism, metabolomics, & mitochondrial medicine.
I'm looking for feedback about the #MEspine2024 meeting so we can do even better for part 2 on Nov 1, 1pm EDT. A few thoughts I've had or ideas people have given me:
1. Add some 5-10 minute breaks
2. Bring in some molecular basis people that presented at #MECFS24 to give talks, so we can more easily work on making the connections
3. Add lightning talks (2 minutes, 1 slide) to bring in more perspectives and diversity of expertise
4. Bring in some experts on downstream effects that come from the brainstem who aren't even in the #MECFS community
Ideas?
I'm really excited about this! This meeting was organized based on @jeff_says_that's lightning talk at #MECFS24 & the interest there was about these topics.
I'm looking forward to making connections between mechanical & molecular mechanisms!
@ThosVarley will be a great moderator/connector. Read his blog about these ideas: https://t.co/aeDaxY6pul
We're going to have an awesome Research Roundtable next Friday (Oct 4, 1pm EDT)!
Two additional speakers are joining @jeff_says_that (@MBVanElzakker and Brayden Yellman from @BatemanHorne) & @ThosVarley will moderate. ๐
Register here: https://t.co/lfjthpxWXz
17) RR has presented at many conferences in the past year, including most recently #UniteToFight2024 & #MECFS24
https://t.co/GZ6HQmkxYh
https://t.co/vl4XQmtxIB
https://t.co/puTlZuQ6sM
https://t.co/cuxMBSIJ7y
I was going to present this Lightning Talk at the Stanford ME/CFS research meeting tomorrow, but due to a last minute shake-up, I won't be able to.
So I'll present it here. @RenegadeRes
Credit to @tessfalor for slide template. 1/n
Very interesting ๐งต featuring tweets shared by @JanetDafoe during #MECFS24. Putting together pieces of the Big Puzzle currently called #MECFS. I've always thought it would 'name itself' when they find answers. Efthymios proposes "Post Metabolic Disruptor Syndrome". hmmm๐ค๐งฉ
1/ After reading posts related to #MECFS24 working group meeting, I saw that some speakers shared slides attempting to look at a bigger picture. First, a tweet by @JanetDafoe shows the following slide by Chris Armstrong.
1/ After reading posts related to #MECFS24 working group meeting, I saw that some speakers shared slides attempting to look at a bigger picture. First, a tweet by @JanetDafoe shows the following slide by Chris Armstrong.
@ErinAPN1 @chydorina If I'm not mistaken, he was involved with #mecfs24, so that could be his stepping stone. ๐๐ค๐
@Rivkatweets on #mecfs24๐
In closing: I spent last week hanging out with a bunch of smart-cookie researchers whose careers are focused on explaining, and ending, our suffering. Take heart, friends, we are not alone. I have hope โ and I want to share some of that with you.
Linkโฌ๏ธ
Check out @Rivkatweets's blog about Ron Davis's #MECFS24 meeting from a non-scientist perspective.
"Iโm here to offer hope. I want you to know what I now know only because I was able to attend this closed-door meeting: There are dozens of PhDs who want to help us, who are actively working to help us. Thatโs their job. & they take their jobs seriously."
https://t.co/YbIQXwZnog
Check out @Rivkatweets's blog about Ron Davis's #MECFS24 meeting from a non-scientist perspective.
"Iโm here to offer hope. I want you to know what I now know only because I was able to attend this closed-door meeting: There are dozens of PhDs who want to help us, who are actively working to help us. Thatโs their job. & they take their jobs seriously."
https://t.co/YbIQXwZnog
The "working group 2024" #mecfs24 is not a continuation of any other meeting, this is a new thing, organized explicitly for #MECFS researchers around the world to come together and share all of their ideas so that they can try to make them line up into one theory that makes sense for the symptoms of ME/CFS. It's specifically for scientists to learn from each other's work, and collectively try to figure out ME/CFS, putting our needs above their own.
Including patients in this meeting would force every researcher to keep things to themselves, not out of self interest, but because if an idea becomes wildly known, it cannot be published, and this presents all kinds of problems like the idea not being able to be referenced in the future, and more. There was also no reason to include patients in this meeting because they just held 2 international meetings that included patients so there would not be anything new to to tell patients in this "working group".
We need to have faith in these researchers, that what they're doing is best for the cause, even when we don't understand what they're doing. Don't jump to rash, harsh conclusions.
Most research fields are not nearly as inclusive as the emerging ME/CFS research field is with patients, we should already be grateful that we are let into the process the way we are. But sometimes it would literally hamper progress, and progress is what we want.
We don't really need to know about ideas that are in the works either. As soon as any of these researchers have something that will benefit us they will make it known for us either in a publication or otherwise. All of these researchers' goal is to end our suffering and ultimately end ME/CFS.
#LongCovid
Seeds of knowledge already sprouting from this week's Working Group #MECFS24!!
This is of interest to me because of an injury I sustained as a child. If you'd like to know more, join in on October 4th at 1 pm EDT!
โฌ๏ธRegistration Link below
We're excited to continue the conversation that @jeff_says_that started at #MECFS24!
Oct 4, 1pm EDT
He'll present a mechanical basis model of #MECFS, followed by Q&A & discussion about how brainstem deformation leads to downstream effects.
Register: https://t.co/KeM6IkFnC0
We're excited to continue the conversation that @jeff_says_that started at #MECFS24!
Oct 4, 1pm EDT
He'll present a mechanical basis model of #MECFS, followed by Q&A & discussion about how brainstem deformation leads to downstream effects.
Register: https://t.co/KeM6IkFnC0
#mecfs24. Integrative discussion amongst the presenters. This discussion is fantastic. ๐
Following #mecfs24 presentations is nurturing my hope. @LastWeekTonight @weeklyshowpod @ComplexlyMedia @TheCrashCourse @hankgreen @johngreen look to @janetdafoe @OpenMedF for state-of-the-art #MECFS #ME #LongCovid #IACC #PAIS research #GreatestMEdicalScandal #JohnVsJonVsME
#mecfs24 Ron Phair leading discussion amongst the presenters.
#mecfs24 Ron Phair leading discussion amongst the presenters.
#mecfs24 Ron Davis. Initiating discussion of how to integrate the various theories to really explain this disease. Connect our theories.
@JanetDafoe This title says it ALL: "Simplifying Complexity Without Losing the Essentials to Define Breakthrough Treatments". It's a mouthful, but it's exactly what we so desperately need in #MECFS. #mecfs24
#mecfs24. Alain Moreau
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